Many thanks deserved

The love that has been pouring in from all who has donated time, diners, and or money has really touched my heart. I can't express my gratitude enough for your generosity. This shows everyone that good can come from even the worst of tragedies. I will continue to work hard to gain my independence using the many gifts you all have provided. I want you all to know love is not a one way street, my love goes back out to you. Thank you so much. Greg.

Star Wars

 The highlight of our weekend was finally getting to see the new Star Wars movie. We loved it even though it was the same formula as others, but what a great show. We even went out for Chinese food afterwards.  The week was pretty good except for the blood pressure; we are battling this low blood pressure fight. The doctor has us trying something new this week, so I hope it will help. We also hired a person for Sunday, Monday, and Tuesday nights and it is working out beautifully.  It is so strange sharing our house with so many people. There are about six or more people sometimes on the same day that are in our house.  But, by the time the day is over we're both just ready to go to bed and Greg is great  falling asleep.

 Today I went back to my Rotary club. It was pretty emotional being in a room full of people that have supported me from afar. Seeing them all in person and feeling the emotion in the room was quite strong.  Greg and I are blessed with the love and friendship up so many.  I have no words to explain what the strength of others means to us besides saying it gives us the courage to keep going every day.

 I have been back to work full-time for over a week. I still sometimes find it strange to be in my office and not in a hospital room.  I guess I am still transitioning back here.

 Greg still get stronger each day. The PT and OT are working on splints to help strengthen his grip. He is working with his mom  i'm going through all his work papers. He is also meeting with the Access – VR  or vocational rehab  counselor on getting back to work. We both don't know what that actually means today, but it is a road to start on. Greg usually has his phone, so calling or texting is always a possibility. He just doesn't answer if he is working with PT or OT. For me a text is better since I'm back at work. Keep in touch we love to hear from everyone.

Brrrrrrrr!

Ed, Greg's brother from Virginia Beach convinced us to go to the Ice Castle in Saranac Lake. It was 13 degrees below zero, but it was a great experience. This year's ice castle theme  is superheroes-notice how I overpower the Hulk! We were probably outside for less than 10 minutes! We then went to Lake Placid for lunch at the Delta Blues restaurant. We had great beer, pastrami rueben and the party bucket (ribs, wings, onion rings, fried pickles). Yum! What a great day-thank you Eddie for getting us out of the house. Tonight we have our wood stove going-it is the first time we have used it. A blessing of a day.

Moving along

We have had a few uneventful days. Still struggling with keeping blood pressure steady. Ed, Greg's older brother is here and will be the turner tonight, so I am looking forward to a good nights sleep. I am working again and that is a challenge. I have to build my stamina up again. Not much else to say, but wanted folks to know we are settling in again.

Peace and Quiet

While we are battling blood pressure issues, snow and cleaning the house....mostly it was a quiet day. We  have a list of so many things to do and work each day to accomplish something. It is hard and sometimes we question why-those moments are hard and unanswerable. Then my daughter calls with a view of the world outside of our house-awesome! Anyone wanting to call or talk about the mundane world-go for it. We would love to hear from you!

Home Again

Greg and I are home with Sox. Glad to be here and enjoy the peace and quiet.

Friday

Today we got some hope that the pressure sore will not fully open up like last time. If this is true it can be back to healing in a few days. We will have to watch it very carefully, no laying on his back, but it will hopefully not turn into anything worse. He seems to tolerate the new oral blood thinner. After not sleeping last night very well, taking a long nap until 11:30 this morning, the rest of the day was pretty good. He had some range of motion with OT, a nice visit with his mom and some good food. The day ended with a visit from Tim, Jarrod, Ava, Theodore, and Thaddeus-the boys sang for Greg and all the kids told jokes. It was nice to laugh.

We may go home tomorrow, if Greg's blood pressures over night are steady and good. It will be nice to be home again,  a little scary, but some peace and quiet will be great. This week has taught me  a few things, one of which is that I need to get the home front more settled before working full-time. I am going to concentrate on getting night care next week. I hope the search will be fruitful. So, if you know anyone looking for work, have them contact me!

Update

 We were moved to the progressive floor. There is still a lot of care just a little less craziness than ICU. Unfortunately, last night we found that Greg's pressure sore reopened. I am very worried about skin  integrity and what that means for his care and his ability to do everything he wants to do.  He is now on his oral blood thinner and we are waiting to see if there are any side effects and that he can tolerate this medication.

 We are trying to figure out more care for Greg. Specifically, we need night care. We can go with an agency which is very expensive and the caregivers are unknown to us. We are so fortunate with our morning caregiver and  would prefer to work with someone who is part of our " family "  because they're just is a sense of  being part of Team Lemos.  Night care is just about turning, fixing pillows, getting water,  possibly a few hygienic duties.. Anything more than that I am in the house  to deal with.  Any help or suggestions on this are very welcome.

Escape from ICU

Greg & Tony

We were able to bring Greg's power chair in today and we made a break for it. OK so, we only got as far as the waiting room and had permission, but it still felt like a jail break! The ICU staff have been incredible and PT and OT came in today and want to make sure Greg does not backslide and gets some therapy. They also can help connect us with much needed information for when Greg does outpatient PT and OT.

This was a much needed diversion to the bad news of more blood clots in the legs and the real possibility of staying in the hospital longer. So, the escape plus visits from David, Mike, Chris, and Kirsten went a long way to cheering up Greg.

We are trying to get back the strength and courage we had a few days ago, before all this happened. This was scary and we are trying to figure out how to move forward and leave the trepidation behind. One day at a time......

Diagnosis

The good news is we have a diagnosis:  blood clots in the lungs. Treatment:  blood thinner probably for the rest of his life.
Thank you all for being there when I needed you. I will update later.

We are in ICU again

 If I don't dump some of this out of my brain, I think I might go crazy. Tonight Greg stopped breathing and we had to call 911 and he was rushed to the hospital.  I believe Tony, his brother, saved his life by doing CPR compressions.  I don't know what happened or what is going on yet, but he is very much alert and breathing comfortably now. I am in the ICU waiting room and it is just really hard being in that place again.  I can't help but ask why or will this keep happening again, it is just too scary to think about in the middle of the night.

 Think good thoughts about us, send prayers, do whatever it is you do to send healing his way.

Week 1

As you may have figured from lack of blog posts week 1 has been full and getting to bed has been the goal. Juggling home and work is a challenge and I am going to have to seek more help, especially overnight. There are still so many things to do at home and sleep is needed. So, I am going to try to figure out how to get someone in at night. I don't know how much this costs or who can do this, but it is a priority. Thank goodness Tony, Greg's brother form Colorado ha been here. He has given me 2 nights of full sleep-what a blessing. I still feel as if I could sleep for a month!

I have found out that the Lemos brothers are quite wonderful. They are caring, compassionate and dedicated individuals. I would be remiss if I didn't include Lynn, mom, in this, too. Without them I would be lost. One surprise for me has been Sox, our red husky. She is completely devoted to Greg. Almost always by his side, she is the official protector!

Home Team

Our home team consists of a nurse, PT, OT, and caregiver. We have met all, but the OT, who comes tomorrow. We like them all-knowledgable, supportive, and upbeat. I think we will do well together. Today, Greg had his first 2 hours alone. I had a doctor's appointment and then went to the DMV. I called and texted Greg as did my daughter. Poor guy didn't have a minute alone. He is set up so he can use his phone with a stylus. He can call and text, probably check and e-mail and Facebook, if he wants-don't now if he does yet.

My brother was with us the first 5 days and I know we couldn't have made it without him-especially getting through learning to use the new Hoyer lift sling. So, I have learned that there is a U-sling and a universal sling. I used a universal sling in the hospital. This sling cradles more of Greg and for me is more secure. The U-sling is more open-good for shower chairs, but the bottom end slips through more. I had to get used to this type of sling. My brother and Greg's bonded over working on our sink leak and then Tim continued on by hanging a TV and fixing our van. The ramp was not closing properly. I don't know what we would have done without Tim and Dave.But they are not the only brothers getting into the action. Tony, Greg's brother from Colorado will be here tomorrow for 10 days. We are so lucky to get this support.

I return to work tomorrow. This week will not be full days as we have to get to some appointments, but I am thinking I will be back full-time next week. I am nervous and know that I will miss Greg terribly. We have been together 24/7 for a long time. He is my best friend and I love being with him. Tomorrow, though, we start leading moments of separate lives.

Many Thanks

Greg and I are feeling so blessed. We have to give many thanks to all for the donations-monetary and food. We give thanks for the outpouring of love, prayers, thoughts, and hugs. We are awed by the love and caring the Adirondack Pet Lodge gave our dog, Sox, for 2 months. She came home today happy and healthy. She wouldn't leave Greg's side all day, watching over him as he napped this afternoon. Of course, she stays clear of my brother. At 6 foot 4, I guess he is intimidating. However, she let him pet her for the first time in years.

I have been asked if I will keep up the blog. I  believe the answer is yes, just not as often. The days are pretty stressful right now figuring out how to live each day. We have had many deliveries of medical supplies, people showing us how to use equipment and the electric Hoyer lift went in on Thursday-the guys were here until 9 p.m. Yesterday we saw Greg's surgeon and he was able to trade in his collar for a soft collar and start to spend time out of it. The appointment went well and Greg is healing well.

A wonderful thing happened today though, we hired a caregiver for Greg, who will start on Tuesday. This is an enormous blessing and a thank you to Tim, Greg's brother for the referral. We are looking forward to working with her and I guess that means I am going back to work next week.

Home

 We arrived home safely and my brother was here to greet us. As an astute individual commented yesterday we will encounter problems that have to be solved.  The sling that was delivered that we use to carry Greg from chair to bed  was not the right one. So, we had to call 911 and get an EMT team to lift him from chair to bed. The bed also didn't come with an extender so turning Greg without the extra footage was difficult.

So, day one, here we are eating breakfast and bring to breathe!

Goodbye Spaulding

This is our schedule for tomorrow-at long last. I can't believe we are actually going home. I am almost all packed up. I think it will take at least a week to unpack everything.

Greg and I took a test drive in the van yesterday. He is able to sit in the front passenger side. This is nice for both of us-being next to each other. It is easy to drive and hopefully, he will be comfortable for the ride home. Fortunately, he has his loaner wheelchair-it will do until his comes in. The hospital bed and lift were delivered. The bed was describes as an old fashioned clunker-I hope it is better than that. All I know is that it has a crank to raise and lower-that worries me.

We should leave tomorrow by 11 and be home by 4:30-5. We will stop at least once maybe more as Greg has to do pressure relief (changing positions) and he can't do this in the van.

What else?
Goodbye Spaulding!

Good Times

The new normal-looks quite similar to the old normal......thanks to the gang below for getting Greg and I out and feeling that life can be full of good times!

The North End

Today was a much better day. We were granted a leave of absence again and Greg was up for a 1 1/2 hour outing. We ended up in the North End and had the best cannoli! Then LJ and Rose came for a visit and we ordered in Italian Food-yum! They started their long drive in bad weather, but made it here and are driving my car back to NY (another example of the goodness that people have-I thought I knew what that meant, but I have been shown a depth of friendship and love these past weeks that I never imagined). Now after all this excitement, Greg is asleep. Sometimes we forget that he is still healing and needs a lot of rest.

Below is a picture of Greg last weekend when he tried the beer. I thought I put the picture on the blog, but was told that I didn't . So, enjoy. We should be back there tomorrow night. Finally, Greg gets to go out with Marty and Arlene.

Tough Day

Today reminded us that we can't stray to far from the reality of Greg's injury. First, the ASIA exam had to be given again before Greg leaves the hospital. It is a test that documents a spinal cord injury. A q-tip and then a pin is gently stuck in Greg at each level of the spinal cord all the way to the sacrum to see if he can feel and then he is asked to do certain movements from shoulders to toes. It is very hard when it goes below the level that Greg can feel or move because he has to keep saying no (as in I don't feel it or can't move it).

Next, he had a shower that ended with an unfortunate incident. One of the issues we have been educated in is skin care. Greg's skin has to be monitored and we have to be vigilant on all transfers. Unfortunately,  this morning he ended up with a skin tear. It could have been the transfer (the sling he sits in) or the shower chair which did not fit him well. This taught how important the fitting and pressure mapping they do for Greg's equipment is. However it takes up to 2 months to get his wheel chair and his shower chair.

Finally, we had to return to Mass General for a procedure. The ambulance ride is tough on Greg as it it bumps him around. All went well-just tiring and a bit of pain in the neck. Again-a reminder of how far we still have to go and what great care we have to take.

Sometimes I feel so strong and then so weak. We have to be kind to ourselves, remember to be kind to ourselves. Greg is gentle with me when I get emotional over each of these issues as I am with him. Our relationship, our partnership is stronger than ever. I truly love and cherish this man.

Marine Crawl

Today Greg's OT definitely earned the title Occupational "Terrorist." She had Greg lean on the table and get from his arms to his elbows to an upright position-imagine, if you will, especially if you went to boot camp, crawling in the dirt. Greg couldn't do it unassisted the first couple of times and then he just did it. He found a way to make his body do this in a new way...amazing!!!

The other incredible news is that we got the van. Tim, Greg's brother, did incredible leg work and educated us on what we needed. We were able to ask the man who held the van clinic to bring a certain kind of van-well it just happened to suit our needs perfectly and now it will be ours on Monday. this is huge-our freedom and mobility form the house. It is a black Dodge Caravan, gently used, with a brand new conversion.

I started packing up today-what a great feeling. we can't wait to get home. We know the challenges are great, but the thought of being in our own space to figure it out is comforting. Additionally, the the idea of peace and quiet is something we have both been craving. So, next Wednesday it is!

Balance

Greg has impressed me before, but today he was amazing with balance. He was siting at the edge of the mat and balancing, hands out at his side (balancing on fists), elbows locked, power in the biceps and then his Physical Therapist said use your scaps to punch forward and pull back, balance, and then put your fists back down, lock your elbows and use your biceps to steady yourself again. If you can imagine this-it is a way to work your arms and muscles without using triceps, which Greg hardly has. It is just amazing watching the way he is learning to use his body bypassing the way we do and learn to use his in a new way.

We had the van clinic today and were amazed at how easy it is to use an adaptive van. Greg wheeled right up the ramp and into the driver and passenger side. There is an easy lock system that you drive right into. Now, Greg can't drive yet, but that will come in the future. The driver and passenger seats role in and out pretty easily, too. I drove the van and found it comfortable and easy to drive. the only drawback that I saw was that it has very low clearance. They drop the floor in order to make the van accessible, but that is necessary for access. I hope we will be able to make this happen quickly.

We continue to be amazed at the generosity of spirit, friendship, knowledge, finances, etc. of people. We couldn't be where we are today without it. Thank you for holding us up. Greg and I have had a hard time from the beginning with accepting all of this and then realized that without out we would be lost. So, what we decided is that in the future we will be able to pay it forward.

New Tilt Table

Today Greg was a able to try the tilt table that also marches his legs (see video below). He did very well, tolerating about 18 minutes with only one dizzy spell. The dizziness signals low blood pressure. He takes medicine for this, but standing will cause low blood pressure until his body becomes used to that position.

Greg along with the OT have been working on adapting to his abilities and using them for daily life. Today, he made strides in eating. The challenge is to find the right spot (position) to place the plated and find the right position for his body (arms, hands) to be in so that he can use a fork, for example, and when the food is somewhat hard (i.e zucchini cooked al dente) he needs to use his right hand to push the fork down. His right arm is becoming stronger so that it can raise the hand to help the left more and more. It is sometimes a frustrating process, but he keeps working at it and all of keep thinking of ways to make it easier and functional.

Good Food

Yesterday we escaped again. This time for lunch. We had some yummy sandwiches at a local cafe followed by a blueberry scone. I don't know if that makes having to go back to hospital food worse. The ride was a little longer than the night before and Greg paid for the freedom with neck pain and being quite tired. However, he said that it was worth it. Later my Aunt Linda, Uncle Jay, Aunt Arlene and Uncle Marty visited us. I went back to the Jewish delicatessen with Arlene and Marty for dinner. I am going to miss the food selection Boston has to offer. Maybe I will just have to start cooking more!

Today we decided on movies and just hanging around. We made a few phone calls and I ran to Kmart for a few things. And I just happened to pass a Legal Seafood restaurant and if you know Greg and I we love seafood and one thing Boston offers is whole belly clams-a favorite for Greg and I and yes, I just had to stop and bring some back to the hospital. I guess it is all about food.

We have more forms to fill out, messages to write, calls to prepare for tomorrow. Going home is close and there is a lot to plan for. We are getting down to the wire and not everything is in place, yet. We are working on it  because we just want to come home.

Standing and a Gift

Because Greg's pressure sore is finally healed, he was able to go on the tilt table. This is a table that stands him up at 70 degrees. Standing is important for bone and muscle strength as well as pressure relief from sitting. At the beginning it is common to get dizzy but you work up to 30 minutes which gives you the ability to get a standing frame. This will be a cool option for Greg in the future. It stands him up and supports him. It comes with a table. Many folks with spinal cord injuries use this as a work station.

Tonight we were given an LOA-Leave of Absence. This meant we were allowed to leave the hospital grounds. We went to Brewer's Fork, a wonderful Pizza pub and bar. It is about a half mile from the hospital, so it is in wheelchair distance. It was amazing being out on our own. We did meet some challenges such as fitting at the table. The elevate function works pretty well at pub style tables. The pizza was fantastic and the beer was great. Greg was good and only took a sip. He is on too many medications to have alcohol now. We stopped at Dunkin Donuts on the way back for an apple fritter and about 2 hours after we returned Greg passed out. The outing took a lot out of him and he has some pain in his neck from bumping around, but he said it definitely was worth it.

Getting home

A GoFundMe account has been set up for us and can be accessed at the following link:

https://www.gofundme.com/n4h95n84


It is difficult to ask for help, but we now know that Greg and I will have major out-of pocket expenses in equipment and bathroom remodeling. In addition, we will have to employ caregivers for Greg (he will not be able to be alone at first when I return to work) and purchase an accessible van.  Only his chair, hospital bed, and shower chair are covered. Our hope is that we can get Greg's world in order so that in the future we will be able to pay it forward-help those in a similar situation start their new life with the tools they need to be successful.

The Burger Joint Field Trip

Today we went on a field trip to the Burger Dive. It was our first trip in a van and it was interesting what it took to get us plus one other patient and 2 staff members to the restaurant and back in 2 hours. You drive onto the lift get lifted up, drive into the van and get hooked onto clamps in the floor. And then repeat in the reverse when you are ready to return.

The restaurant presented a few obstacles. Greg couldn't use the table because it was too low. Luckily, they had trays and he could balance it on his lap. The meal was a burger and onion petals, so finger food that Greg can handle.  I had to hold the water bottle for Greg because it was too heavy for him to use until it was more than halfway empty. The tables were set together in a rectangle (4 small square tables put together. I was sitting between Greg and the other patient. Greg couldn't hear her and she him. After finishing eating Greg was able to turn the chair to be more a part of the the conversation. 

We have spent so much time in hospitals that the "real world" seems strange and the hospital seems like the real world. It is definitely time to go home and turn the world around again. 

Rockin a new look

Greg is wearing a great new shirt that Tim brought-why is it great? It is soft and stretchy-easy to put on  and get over the head! I am sporting a new scarf, custom-made by Michaela, Dee's granddaughter. Dee and Dave dropped in today for an unexpected visit. Not only did they bring the scarf but they brought Jewish crack/Christmas crack-OK I looked it up and it is saltine toffee-but made with club crackers-ooohhh my goodness so good and Greg gave strict instructions to not share with anyone!

Greg had lots of therapy (concentrating on arm strength and balance) today and had a double session on spinal cord injury education. He graduated for Speech/Language and we played Outburst to finish off the session. I found out that Greg is very knowledgable about Halloween. Tomorrow we get our one and only field trip. We are gong out to lunch with the PT and one other patient. We don't know where, yet. I guess it is top secret!

A quick update

Today we picked out a shower chair-again I ask, who knew what this was all about. So, we get trunk side support, leg support, a mesh type chair that can be tightened or loosened depending on needed support. And then of course is the cushion, which come in 3 different directions. These type of decisions is one of the reasons why we came to Spaulding. The expert therapists have much needed advice and experience to share with us to make the right decisions about the equipment we need.

Greg has started using light weights on his left and right arms, he is able to hold his head straighter, he is eating easier and breather stronger. Little by little, day by day. He is a fighter and I am impressed by his strength. This doesn't mean he never goes to a darker, sadder place, but what is impressive is his willingness to take my hand, to be team Lemos/Lesser, to let the sadness wash over him and let it go. We are strong together and will bring this home with us so that we can build a new life together.

Wonderful Sunday

Today we had a great visit from Tim and Lynn. They brought us Christmas gifts and Lynn baked us yummy cookies and brownies. We so appreciate the long ride up and back to and from Plattsburgh they made today. Most of all we appreciate the love they gave us, hugs and kisses. We have reached the point where we are looking forward to going home and being with family and friends. It is is time to get out of the hospital.

So, we will spend the next couple of weeks making sure we can get home and get help and therapy there. Greg will continue to work on strength and understand how to use it. And both of us will continue to nurture our love, find humor daily, and support each other.

I had a mother wonderful dinner with my Uncle Marty and Aunty Arlene. They took me to a Jewish deli in Brookline. For a Jewish girl this was heaven. Plattsburgh does not have this and the one Jewish Deli in Burlington went out of business a while ago. They have fed me well each week and promise to come back next week. I think they have spoiled me.

We are thankful that

• Emily is doing will in grad school her last semester, completing her thesis, internships, and classes
• Gregory Jr. and Rachael have found success in their careers
• My dad had a successful knee operation
• Jack and company built a ramp for our home
• Dee, Dave, LJ, Rose, and Tim have taken care of our home and prepared it for our return
• We had a chance to talk to Mike, Chris, and Kirsten and pray for Jarod's full recovery
• That Marylyn, Lauren, Rabbi Rimler, (and I know I others) called

I know there are more things we are thankful for and things I have mentioned in previous posts, but please know we are humbled by an outpouring of support that allows us to concentrate on Greg's successful recovery. And tomorrow-back to work!

Fun in the snow!

Today Greg decided to test the wheelchair in snow. I have a video which is pretty neat, but for some reason I am having trouble uploading. it When I figure it out, I will. We went around the boardwalk in front of the hospital and enjoyed being outside. It was nice to have a day off, enjoy the outside, some movies, a little Rose Bowl parade, and some phone conversations with family and friends.  Tomorrow is back to work and we look forward to a visit from Tim and Lynn on Sunday as well as my aunt and uncle.